Stories 2018-2019

The sicker Enric Álvarez Guayta gets, the healthier he feels. To him, Alzheimer’s is primarily a menacing figure who lies in wait down on the street. But to his wife, Mònica Pàmies Bermúdez, Alzheimer’s moved in long ago.

When Mònica feels ready to explode, she seeks refuge in the kitchen. Here at the counter, she can gaze out the window with a cup of tea and stop for breath. Her husband’s transformation has been extensive, but it’s the small changes she has the hardest time comprehending. For instance, he no longer knows the difference between shaving foam and toothpaste. How is that possible? she asks herself. The man who had so much energy, so many talents?

In the old days, Enric was the chef in their marriage. After work, they’d each hurry home to meet in the kitchen, and he’d do the cooking while she kept him company. His zest for life just bubbled out of him, and every dinner with Enric and her daughter Raquel was a small party. Once in a while the couple still bumps into Enric’s old colleagues out in town, and they’ll say, “We miss you so much, Enric – you made us laugh!”

The first warning signs arrived so quietly, they barely seemed like signs of anything. Raquel asked Enric not to make anything with potatoes for dinner – and potatoes were precisely what he made. Then one day, there wasn’t any dinner at all. “Why should I be your servant?” he demanded to know. “Raquel should do it!” Mother and daughter were bewildered. For 15 years, he’d taken such pleasure in cooking for his family. And he’d always doted on Raquel – why was he suddenly so belligerent?

In 2012, Enric was fired. During the day he lay on the sofa, not looking for a new job, and during the evening, when Mònica came home from work, they’d get bogged down in arguments that left her more and more confused. One day, in the midst of a confrontation, she said, “Tell me what I just told you.” His reaction caught her completely unawares. For he could not reply; he could not remember. She mulled over the signs that her husband wasn’t himself, and became convinced: he must be depressed because of the firing. Raquel agreed. Then one evening, Mònica found herself being mesmerized by a TV programme. And suddenly, all the signs pointed to something else.

Enric had forgotten that Raquel didn’t care for potatoes. When he protested against making food, it was because he couldn’t find his way around his own kitchen. And when she kept losing the thread in a labyrinth of conflict, it was because there wasn’t any thread to hold onto. The TV show was a fundraiser for Alzheimer’s.

Big dark glasses
Today, several years after Enric was diagnosed, Mònica is a seasoned observer of how Alzheimer’s is changing her husband. Enric himself doesn’t think that there’s anything wrong. “No problem here!” he says, flashing his wife a bright smile.

Mònica explains that he orients himself by reading people’s facial expressions, listening to the sound of their voices – and then guessing his way forward. The flat is still a safe place for him. Yet outside, dangers lurk. He’s begun to regard his illness as a figure that’s waiting for him down in the street, that wants to lead him astray. He calls this figure “Mr Alzheimer”, and Enric says that he avoids the man’s “grip” by not going out alone. As long as Mònica’s present, everything’s fine. If she doesn’t succeed in protecting him again the disease’s grip, he bristles. “I’m angry with Mr Alzheimer!” he says then. “Goddamn Mr Alzheimer!”

Enric’s sentences flutter with fragments of sense. Yet there’s one particular place, Mònica says, where he is able to express himself fully. He goes to an art therapy class once a week, and one of his recent drawings shows serene faces floating like balloons among the trees. From their heads, leafy branches grow, the branches getting entangled with each other and turning into fingers. But what does Mr Alzheimer look like? Enric grasps a stick of charcoal. His hand knows what it’s doing. A face emerges with firm, rapid strokes. It sports a hat with a jaunty feather and large dark glasses. That’s what Mr Alzheimer looks like. But why such big glasses? Enric does not hesitate. “Because I wear glasses,” he says, quickly removing his pair.

I’m Google Maps
It takes Mònica’s full attention just to keep their everyday life functioning. From six in the morning until about midnight, when she goes to bed, she is attending to the acute needs, large and small, of other people. Before leaving for work, she lays out clothes for Enric and prepares his lunch. At work she juggles clients from around the world, and this job suits her temperament. She relishes the energy and tempo of it – she makes decisions, she cuts to the chase, she jokes with her co-workers without slowing down, and the phone rings constantly. Often it’s Enric. For when he’s looking for something, he calls her up, and over the phone she helps him find it. “I need to develop a photographic memory to do this,” she says, before adding with a little smile, “These days, I’m Google Maps.” She always tries to answer patiently and quickly, because if she lets the phone just ring, she begins getting worried. Ten minutes later, he calls again. And again. And the next day she starts all over from square one.

Raquel no longer lives at home, but she sees how her mother struggles not to buckle under. Recently she offered to drop by every day to make sure Enric eats his lunch. It would take a great weight from her mother’s shoulders, because Enric forgets to eat when he’s by himself. But Mònica struggled to accept the offer; Enric’s her responsibility, after all. Raquel insisted. And insisted again. Mònica imitates her daughter’s gentle voice: “ ‘Mama? C’mon, Mama, I want to, please let me do it!’ ” Mònica lets out a shuddering sigh. “Finally I said yes.” She takes a deep breath, then adds, ”But I felt so sorry for her.”

Transformations
Now and again in the evenings, while Enric’s watching TV in the living room, Mònica goes to sit in the kitchen. Out here, the old Enric is closer. She’s fond of the walls’ deep oxblood colour. She considers the day’s minor crises and how, here and now, she can best help her husband. Enric strews his shirts everywhere, and moves their things around. Afterwards he gets frustrated when he can’t find anything. And she wonders: is she too strict, for trying to get him to keep the flat in order? Are there better ways to help him? There are other things that she can’t make herself think about. Not yet.

The first time she saw Enric, he was in a group of his colleagues, all looking quite grave. He attracted her gaze with the way he radiated warmth and a passion for life, and she knew: she wanted to accompany that man. “We laughed all the time,” she remembers. “We laughed at life.” For Mònica, that moment is a cherished memory. She has the feeling that he can no longer recognize himself in the mirror. But she sees him. She sees with clarity the Enric he once was, and she accompanies the Enric he is becoming.

VIDEO

Mònica & Enric – Drawing Mr. Alzheimers

Today, several years after Enric was diagnosed, Mònica is a seasoned observer of how Alzheimer’s is changing her husband. Enric himself doesn’t think that there’s anything wrong. “No problem here!” he says, flashing his wife a bright smile.

Enric Álvarez Guayta

Age
63

Residence
Barcelona, Spain

Diagnosis
In 2014, Enric was diagnosed with Alzheimer’s disease.

Children
One son from a previous marriage

Employment
Enric worked as a customs broker until 2012, when he lost his job in a round of layoffs.

Everyday life
Enric is no longer capable of making plans or seeing things in a larger context, and he’s lost his initiative. Yet he can still stay home by himself. He’s always loved drawing and painting, and Mònica makes sure that he attends art therapy and memory classes.

Mònica Pàmies Bermúdez, Enric’s wife

Age
49

Residence
Barcelona, Spain

Children
One daughter, Raquel, from a previous marriage, and one grandchild

Employment
Mònica works as a freight forwarder for an air- and sea-freight company.

Everyday life
Mònica looks after her job and her husband. Some years ago, she took up smoking again, because it calms her down a bit. A local Alzheimer’s organization advises her on practical and legal matters.

Mònica’s advice for someone whose spouse has recently been diagnosed with Alzheimer’s

You need to be very strong. The life you had before will be destroyed. My husband is maybe 10% aware of his illness, depending on the day. He thinks he is more or less the same person, it’s just we who keep misunderstanding him.

So the patient suffers from the disease less and less. He’s not aware of it. But you are. It’s you who will be suffering from Alzheimer’s. If you’ve said something ten times and that doesn’t work, it’s your fault and you have to change your approach.

When it gets hard, remember: it’s not his fault! It’s the illness. Before this happened to me, I would have said: I could never deal with that. And then you find out you can. But why? Why me? I used to ask that too. But I no longer look for explanations.